Let me tell you a story

About 4 weeks ago now one of my funny headachs started, no big deal had them before. Yea I noticed that things to my left didn't look right kinda hard to see unless I look right at them again nothing new benn told it was nothing to worry about possabile a mild migrane. They useally don't last long few days at most maybe on and off for a week. Well this time the funny headach was alltle worse and my vision got worse kinda fuzzy had to concintrate it has been hot hear I just been over doing it again. Then came the double vison mostly on the left but more to the front well this got so bad one day while I was at work I cut my day short and asked the wife to take me to the clinic, she knew something was wrong I don't go to the doc unless I am diein or she makes me. O did I mention the dizzy world won't stop moving? Well I was figureing I had some ear infection and possable retnal damage from the some kids playin with a lazer a while back. We get in rather fast was a slow day at the walk in clinic Doc came in looked me over ask a few questions standerd stuff. Of courec I got the same look about my vision comeing and going fuzzy to the left stuff seen that before. Then he said well something is not right would you be willing to get a CAT scan to be sure nothing wrong in your haed? Humm ok basic over kill so he calls it in and we walk next door to the ER and they get me in wow this place is dead at 6:45 pm well the report comes in right away before the clinic closed and it said the was an anomoly near the optic nerv and recomended an MRI with trace. Well that would take a day or two to get in so we went home The next night I get a call the doc had consulted two more radiologists to confirm all there agreed with the location and simtoms they need a better look can you come in on thursday? By now it was double everything all the time. Been thru an MRI before no biggy fore me except it so dang cold in there. Next day the report comes back and I get a call and am told the report sugests MS and to come back to talk to the doc. When we read the report and see the films the wife and I knew. We started some research and it was like a light came on, O so thats what been going on, that is a simtom? etc etc. Now I may not be the sharpest pencile in the box but I am no dumby and the wife is real smart and works with disabled pepole her whole life. I just did not realize how suttle the singns could be. O what I first thought was a type-o I figured out, it said 17 leasions in 7 reagions. I have used the phrase "it feels like my brains wraped in a wet towel" for years and when I try to think back it was my mid school years that I first remimber that. My first reaction was relife actually at least now I had a reason for those odd days I would have, some days I could not walk straight or would almost fall over turning a courner, some day I couldn't think at all, others it was just hard to see detail, and I was right when I said it felt like a wire lose in my brain. Well the prednosone is helping some but the vision is only soso and the funny stinging headache just will not go away yet. I did go see an Opthomoligist I set that up right after I had the CAT scan to be safe not much he can do but I got a base line and his opinion confirmed the MRI and gave me some advice on how to get by and what signs ment I need to come see him asap. Now it is staerting to sink in the more I learn the more I realize I have had MS just didn't know it. I had been raised to find away to get things done I wounder how much of that "learning disability" they said I had as a kid was Cognition problems.

I am 43 YO now and been uninsured for years as well as very under employed. I know I need to see a Nerologist but am frustrated as to how to find a good one besides how to pay for it. These last few days have been a real kick in the gut I was just starting to think there was the end of the tunnel to find out it's an on comeing train yet again. I know it not the end of the world just a bump in the road. It just been a very bumppy road aroud here and I already feel like I am letting my wife down because I can't find a more steady payin job with bennies.

Does anyone have advise on what I can do to help with the long turm expenses? I currently drive and spend time outside for work it not hard work and only pays ok some weeks good depends on the number of jobs I get. At least I have a loving wife that knows what to expect and is fully qualified, she spent 20 some years in a facility for severly disabled pepole so this would be a cake walk for her. I just wish she didn't have to she needs time off too.

Sorry for being so long winded, I just really don't have any understanding pepole to talk to except my wife and I bother her enough already. Thanks for reading and God Bless.

[22cyclist]

No insurance

Depending on where you live, you can go to a university hospital (a teaching hospital) and get treated. In most states, there is one run by the state and they take indigent patients. I am a nurse and worked at one in NC. Otherwise, at any hospital affiliated physician (and I would definitely take this route) can see you and you can apply for financial assistance. Each hospital has the ability to set up payment plans. Interest cannot be applied to medical bills so it doesn't matter how long it takes you to pay them. I was diagnosed in 2004 and am still paying a bill from then at 45.00/month before I got insurance. Good luck and seeing a neurologist will be the best way to determine if it is for sure MS and not another disease that mimics MS on MRI or otherwise.

[Houd Daddy]

Thank you for the reply

I too live in NC, I know that post was a lil rambaling it has been an interesting emotional week around here. I know that this is not a conculsive DX, but the history is there now that I was asked the right questions.

This is the first time anything has happened that has actually physicaly prevented me from doing stuff. I have just found a way to muddle thru before and will still find a way, it just alot harder when you have a hard time seeing. Almost done with the prednisone and things are marginally better. I did go ahead with the appointment with the eye doc, good news no retnal or optic nerve damage. He would not confirme much else but did say all my symptoms are in line with MS. He also told me what to look for and to just come back if there was pain or narrowing vision and they would get me in, NOT to wait for appointment.

Our big efforts have been trying to find a good nero with MS experiance and a way to cover the up front expences. I know we just need to bight the bullet and go to a nero. I am hopeing to find one that I don't have to go 2 or 3 hours to see.

My wife is a COTA and has over 20 experiance with sever mental disablitys, and now works in a pediatric clinic so what ever this is I am blessed to have her. I have been put on a program already by her and my Mother-in-law another COTA of 30 some years. To help me cope we have adapted some sunglasses to limit the double vision, that has helped alot. I have been evaluated for my spacial relation and balance, that has not gotten anybetter.

Thanks again for the reply, any sugestions on what to ask or say to the nero are welcome. I have tryed to talk to doctors about so much of this stuff before and I guess I just have not been able to get my point across.

P.S. I guess I not smart enough to get the spell check to work LOL

[22cyclist]

If you live near UNC or Duke, both hospitals have excellent MS specialists that your eye doctor or primary care doctor can refer you to. I go to UNC and see Dr. Markovic-Plese. She is a leading researcher in MS. It may be worth the drive even if it is a long way just for the initial work-up and potential diagnosis (both money-wise as it is a state-run hospital, and due to the fact that multiple testing can be done on-site that day). Afterward, they can refer you back to a neurologist near you. It is not a huge burden though, they follow MS patients every 3 months so still worth the drive.

[JerryD]

Houd Daddy,
You told us a lot, but you didn't mention any testing. Did you get a vitamin D test? What are your levels in ng/mL? Did you do a Lyme disease test? A VER test? Any nerve conduction tests ? A Lumbar Puncture? Any MRI's , spinal or brain ?
MS is complicated, it isn't the common cold. Get somebody to do the tests and get serious. Good luck

[Houd Daddy]

Well that is part of the reason I posted. I want to find out more about what needs to be done and how urgent each is. The only definitive teast done so far is the MRI. That lasted almost two hours, they keep wanting more views. I have had MRI's before and it was not cuz moved around. The report was writen in a clear statement lilttle doubt what the think it is. The follow up history is there and corilates to the areas effected.

The Optho ruled out other causes of duoble vision.

The only thing I am told is I NEED to see a nero. The clinic printed a list of nero's for me but it was basicaly just that a list of names with in 30 miles, many of them not taking new patents. The main SX I am haveing now are lack of balance double vision and sever vertigo along with what I have always called "my headache" not really pain but localised sinsations of tingaling and or pressure in my head. The Perdno cleared up the verigo but has done little for the balance and vision, the headache like always dependes on the day. After being asked the right question Cognative fog is something I have just delt with since I can recall at least age 12 or so, along with balance and vertigo sometimes I am fine with heights and motion sometimes I can't walk a straight line with one hand on the wall, weak/numbness in hands and arms, random eye movements, random boady jerks sometimes my whole boady sometimes just a part, superimposeing words and numbers. The list can go on some of these where no more then way does it feel like I am wearing thick gloves to day to I can't feel a thing on that part of my hand, arm, leg.

When I found out these are all sx I was glad to know there might be something I could do about it. I do count myself as very lucky I have only had this one major event and things could have been much worst, tho the MRI made it clear this has happened many times before. But now it doesn't go away as fast and it is over a month that my vision is not right. I have been asking myself "when was the last time you had feeling in the tip of those fingers" along with too many other things.

I have been reaching out to what limited resources I have to help find the best path to take. I know to well how easy it is to get caught in the health care treadmill of well if it not bothering you right now whats the problem. Or we will just run the same test the last guy did. What I don't know could still fill books but I do know I am not looking forward to an LP, I would do that VEP i thik it called with the electrods and test nerve responce, or simulare test tomarrow if I could other then that I am still unsure of what would be the next step.

I am not even sure what to ask the doctors office when I call, hey how much is a visit, would you help me figure this out, Do you know anthing about MS, Can you see me this month?

Again I ramble I really don't have anyone else to talk to about this stuff unless I want everyone in town talking about it, small town.

[22cyclist]

Give them a short list of your symptoms, tell them you already have an MRI and have been referred, and then discuss the rest in detail with the neurologist. For sure ask about the price, it will be way up there, but ask about a payment plan since you have no insurance. Go in to the appointment with a timeline of your symptoms.
1. When you first noticed them.
2. How long they lasted.
3. How long each episode lasted, and where each episode effected.
4. List what doctors you have seen and their names so they can get your records.
5. Bring your MRI results and films on disc.
Neurologists are sticklers for detail, and they want to know exactly when symptoms start and end and what they were and are. It is all a part of the process of elimination in diagnosis.